The meeting room was jammed. Huge speakers were set up on the porch so that those who couldn’t get a seat in the main room could still hear the presentation. The organizer announced two more sessions would be held the next day to accommodate everyone who had registered in advance.
The caterer added giant gulf shrimp to a tower of pineapples and greenery arranged to look like a palm tree. Attendees filled their glasses from a three-level fountain of punch, and snacked on cheese and chocolate. The mayor arrived.
A real estate pitch? A motivational seminar? No, it was Richard Taylor’s talk on Alzheimer’s last Monday at Arden Courts of Largo, an assisted living facility. Richard, a psychologist diagnosed with “dementia, probably of the Alzheimer’s type” at 58, is one of the most outspoken advocates for those with the disease. His book. Alzheimer's from the Inside Out, is a collection of essays he’s written over the four years since his diagnosis.
But I still wasn’t prepared for the power of his presentation. It’s really a short play based on his book. On Monday, Richard played the person with Alzheimer’s, while a local caregiver read the caregiver’s part. Lisa Milne, Program Specialist from the Alzheimer’s Association - Florida Gulf Coast Chapter, narrated.
“I have become an “It,” Richard says in one scene. “People talk about me, instead of to me.” When he tries to maintain his independence, his family takes away the checkbook and the car. “Don’t worry, we have your best interests at heart. We’ll take care of everything,” the caregiver and the narrator chant in unison.
When the reading was over, and it was time for Richard to take questions, everyone around me was in tears. One by one, caregivers in the audience took the microphone to ask Richard for advice. He was careful to say he can only speak from his own perspective. But he recommended they involve the person with dementia in decision-making about life arrangements and care as much as possible, and gave some examples. He said that hearing about the experience of others in support groups can be helpful. He suggested they try some of the ideas in the book The Best Friends Approach to Alzheimer’s Care.
I wish I could have read Richard’s book and heard him speak while Dad was still alive. Maybe my parents could have gone with me to the presentation. And maybe I would have worried less about what was wrong with my father and worried more about spending time with him.